Hi everyone,
Sorry to keep you all waiting to find out how Ellie is doing. It has just been so nice being home. 2 weeks today! The girls were excited to be together as a family again. When we brought Ellie home, she was not like herself. She was pretty fussy and wanting to be held all the time. She screamed through her sponge baths, diaper changes and when we put cream on her skin. I think her sensitivity to touch increased while she was in the hospital. Reason #1 for her fussiness. I can’t blame her when she was poked and prodded all the time. Nighttime was torture too since she didn’t want to go to sleep in her bed. I spent several nights sleeping in the recliner with her.
The Friday after we came home we went to her optometrist. He said what I already figured…glasses if she can be fit for them. She has a hard time seeing close up and her left eye tends to wonder when she concentrating hard. He sent us to a frame-maker in town who was luckily able to fit her for glasses. Not an easy feat since she is so small and does not have much of a bridge to her nose. Last week we picked up her glasses and she looks adorable! (Of course, I’m her mom so I’m going to say that!) You can imagine the stares we get when we take her out in them, but boy do them seem to be helping her. She really is fascinated with her toys now.
After that appointment, we went to Ear, Nose and Throat (ENT) to get a hearing test. She didn’t pass again. They are saying it looks like fluid behind the ears. I know, she hears perfectly well…of course we don’t know how clear it is for her. She also has had no ear infections, but they say not everyone gets one and they want to make sure she doesn’t end up with one. So we will have an appointment next week with the ENT doctor.
That weekend she developed a really bad rash in her diaper area that was even bleeding at times (lots of bowel movements, but not dehydrated). Thanks to the advice from an NICU nurse friend of ours (thanks Annie!!) we were able to clear up her rash. So, reason #2 for her fussiness.
So then Tuesday of last week we went to KC for our checkup with Dr. Ostlie and he said everything looked great. He took a sample of her bowel movement to make sure she didn’t have a bacterial infections and took swabs of her j-tube and nose to help clear her of VRE and MRSA precautions (it takes 3 swabs 3 weeks in a row).
On Wednesday, we saw our pediatrician. I think it took about 40 minutes just to get caught up on everything…unfortunately, Mercy did not send him discharge papers yet so he was not updated on our last couple weeks in the hospital. While he was doing her physical, he asked if she had any teeth and I told him no. Then I was holding her upper body while he checked her abdomen and low and behold, she had one tooth that had broken through and one almost in (came in on Thursday). So, reason #3 for her fussiness. Our girl has been busy.
As for Physical Therapy (PT), they have been impressed. She has made great progress in the 2 weeks she has been home. She is sitting up well in her special chair and is even using a bit less help when we hold her. She’s using her arms well, is finally grabbing her feet again and can even tolerate some tummy time. She is also babbling a lot and saying mama and dada.
Sorry for such a long update. I will try to do them more often now. I also am going to try to get some pics onto her blog.
Natalie
Tuesday, January 29, 2008
Monday, January 14, 2008
Home Tomorrow!!
Hi all,
Ellie did well throughout the weekend and all signs point toward going home tomorrow. She maintained 30 ml feeds all weekend and then we made them 24 calorie today and she's had no problems! They have even taken all her monitor leads off tonight and the only tube on her is her j-tube. We have continued working on oral feeds too, but she is not too interested in them. She eats some and then decides to blow bubbles. I think some is getting down but most is not. Hopefully this will improve when we get home. Starting around Thursday or Friday she started smiling and babbling again and yesterday she started laughing. It is so good to see her happy...Dave and the girls were sure glad to see her happy this weekend.
We will have lots of work to do when we go home. She had made some really good progress after her gastric pull-up surgery in September. She was eating 1/4 of a cup of food 3 x a day, rolling over, pulling her feet up toward her hands and mouth, playing well on her tummy and starting to babble---she was saying dadada, yayaya, wawawa, nanana and had just said mamama before the j-tube surgery. The babbling is starting to come back--nanana and mamama and she's using her hands well again. She is even shaking her head no at me when she done eating and was banging mallets togther during her music therapy session today (these are new things). She also loves making fish faces and kissy noises at all the nurses.
Physical Therapy (PT) came by today and worked with her. She does not like being touched a whole lot as it is now but she was really ticked off by the end of the session. She doesn't like laying on her tummy and won't push up with her arms, doesn't want to move/roll toward a toy (though she does manage to move back onto her back) and keeps her legs in a frog like position when she's laying on her back (this is bad on her hips). PT wants us to continue to get some help at home. These are just setbacks we will have to work through. Of course, when you consider she's had 7 surgeries in the last year, all in the chest/abdominal area and a life threatening infection...she's doing pretty well. Our wound care nurse says they call her their little miracle. I still have a hard time thinking about that night when we brought her home and morning when we brought her into the ER. When I do, I have to get up and look at her and see that she really is okay now.
So...Ellie and I are really looking forward to getting home with Dave and the girls. We've missed them bunches. I can't promise pics anytime soon (dial-up internet at home) but we'll see what we can do. I'll try to update whenever we get home. Thank you all for sticking with us. I believe your support, thoughts and prayers have all been instrumental in helping us get through this difficult time.
Ellie did well throughout the weekend and all signs point toward going home tomorrow. She maintained 30 ml feeds all weekend and then we made them 24 calorie today and she's had no problems! They have even taken all her monitor leads off tonight and the only tube on her is her j-tube. We have continued working on oral feeds too, but she is not too interested in them. She eats some and then decides to blow bubbles. I think some is getting down but most is not. Hopefully this will improve when we get home. Starting around Thursday or Friday she started smiling and babbling again and yesterday she started laughing. It is so good to see her happy...Dave and the girls were sure glad to see her happy this weekend.
We will have lots of work to do when we go home. She had made some really good progress after her gastric pull-up surgery in September. She was eating 1/4 of a cup of food 3 x a day, rolling over, pulling her feet up toward her hands and mouth, playing well on her tummy and starting to babble---she was saying dadada, yayaya, wawawa, nanana and had just said mamama before the j-tube surgery. The babbling is starting to come back--nanana and mamama and she's using her hands well again. She is even shaking her head no at me when she done eating and was banging mallets togther during her music therapy session today (these are new things). She also loves making fish faces and kissy noises at all the nurses.
Physical Therapy (PT) came by today and worked with her. She does not like being touched a whole lot as it is now but she was really ticked off by the end of the session. She doesn't like laying on her tummy and won't push up with her arms, doesn't want to move/roll toward a toy (though she does manage to move back onto her back) and keeps her legs in a frog like position when she's laying on her back (this is bad on her hips). PT wants us to continue to get some help at home. These are just setbacks we will have to work through. Of course, when you consider she's had 7 surgeries in the last year, all in the chest/abdominal area and a life threatening infection...she's doing pretty well. Our wound care nurse says they call her their little miracle. I still have a hard time thinking about that night when we brought her home and morning when we brought her into the ER. When I do, I have to get up and look at her and see that she really is okay now.
So...Ellie and I are really looking forward to getting home with Dave and the girls. We've missed them bunches. I can't promise pics anytime soon (dial-up internet at home) but we'll see what we can do. I'll try to update whenever we get home. Thank you all for sticking with us. I believe your support, thoughts and prayers have all been instrumental in helping us get through this difficult time.
Thursday, January 10, 2008
Still Here
Ellie went to Radiology yesterday morning to have the fluid/abssesses around her liver aspirated (taken out). They only had to give her gas and put her to sleep. No breathing tube was needed. When they tried to aspirate the fluid they could not get very much. It was very thick and red. Turns out that it's a hematoma (blood clot). She will not need anything to get rid of it, it will be reabsorbed by her body. They did get enough to culture it and so far the culture is negative.
The stool sample they took came up with a negative culture too (yeah) but the culture on her incision site came up positive (she had a little leaking there the other day) for VRE--Vancomycin Resistant Enterococcus. Apparently it is not in her incision site, but on the skin around it. Basically it is a bacteria that is resistant to the antibiotic Vancomycin--which is a strong antibiotic used to treat MRSA staff and other infections. She does not have an active infection, but is carrying the bacteria so we are on isolation precautions (yellow gowns and gloves) for that. She contracted it because she was on several antibiotics, had different IVs in, had a low immune system, etc....her body was open to every chance of getting it. Infectious Disease says her body will eventually start making good bacteria again and it will get rid of the VRE. The funny thing is that we were just starting the labwork to get Ellie out of isolation precautions for MRSA (which she had way back in September)! At least she likes yellow---apparently Sydney and Reagan do not. They both refused the yellow toothbrushes Dave offered them the other day (they wanted the pink and purple ones). So now he says we have 2 new yellow toothbrushes that neither one will use. Guess they are Ellie's when she gets teeth!
They started Ellie's j-tube feeds back up yesterday and she is now at 20 ml of 20 calorie formula. We just got permission to slowly go to 25 ml. Our goal is 30 ml of 24 calorie formula without complications. Dr. Ostlie says she is looking great and, if all goes well, may get to go home on Monday or Tuesday!!
The stool sample they took came up with a negative culture too (yeah) but the culture on her incision site came up positive (she had a little leaking there the other day) for VRE--Vancomycin Resistant Enterococcus. Apparently it is not in her incision site, but on the skin around it. Basically it is a bacteria that is resistant to the antibiotic Vancomycin--which is a strong antibiotic used to treat MRSA staff and other infections. She does not have an active infection, but is carrying the bacteria so we are on isolation precautions (yellow gowns and gloves) for that. She contracted it because she was on several antibiotics, had different IVs in, had a low immune system, etc....her body was open to every chance of getting it. Infectious Disease says her body will eventually start making good bacteria again and it will get rid of the VRE. The funny thing is that we were just starting the labwork to get Ellie out of isolation precautions for MRSA (which she had way back in September)! At least she likes yellow---apparently Sydney and Reagan do not. They both refused the yellow toothbrushes Dave offered them the other day (they wanted the pink and purple ones). So now he says we have 2 new yellow toothbrushes that neither one will use. Guess they are Ellie's when she gets teeth!
They started Ellie's j-tube feeds back up yesterday and she is now at 20 ml of 20 calorie formula. We just got permission to slowly go to 25 ml. Our goal is 30 ml of 24 calorie formula without complications. Dr. Ostlie says she is looking great and, if all goes well, may get to go home on Monday or Tuesday!!
Tuesday, January 8, 2008
Latest News
Well I can't seem to get an update on Caringbridge from this computer so hope everyone finds it here. I did get to see Dr. Ostlie on Monday and had a chance to ask our 2 pages worth of questions about what is going on with her. It was so nice to hear that he had checked in on her often during vacation and knew where we were with everything. He even admitted that there was a time that he worried about whether or not she was going to make it.---Seems like everyone keeps saying that.
After Sunday's episodes they decided to do a scan of her tummy on Monday. She did not have to be put totally under for it but instead was given meds to make her sleepy. It worked, but upon seeing her in recovery I didn't find a sleepy girl but a very playful one. She was babbling and playing! This was the first time I had seen this in almost 4 weeks. It was awesome and I took pictures. I'll have to wait until Dave gets down this weekend to post them.
Unfortunately, the test showed fluid in 3 areas around her liver. They do not know if they are absesses (infected pockets of fluid) or just fluid. My understanding is that it is fluid that was leftover from her whole swelling incident...not new fluid. The fluid/absesses are not hurting the liver. Guess I'm not surprised by all this. I just new something wasn't quite right and better to find it before we go home.
I woke up this morning to the most beautiful noise. At first I thought Ellie was upset then I realized she was playing and babbling. I went over to the crib to say good morning and got the best smile! What a nice change. The plan for today was to have the fluid taken out (they will do this by needle, they put a tube in to drain excess fluid). I was even hurried out of the shower and rushed down to Radiology with Ellie in her pillow covered wagon. When we arrived they told us there was a mistake and it has to wait until tomorrow when we have an anethesiologist present. Oh well. In the meantime, they decided to start her feeds back up this evening at a very slow pace of 10 ml per hour and increasing 2ml more every 4 hours. Of course she won't get very far since they have to stop feeds at midnight due to her procedure in the morning.
Oh, and the best news is that Dr. Ostlie gave permission to try oral feeds again 3 x a day. Only about 10cc which is small but enough to practice with. When I gave her the cereal, she tasted it with her tongue twice then opened her mouth wide for a big bite. She went back to eating like she hadn't missed out on anything!!! This is so awesome. One less thing to reteach. Well, I'm off to bed to get ready for a busy day. Talk to you all soon.
After Sunday's episodes they decided to do a scan of her tummy on Monday. She did not have to be put totally under for it but instead was given meds to make her sleepy. It worked, but upon seeing her in recovery I didn't find a sleepy girl but a very playful one. She was babbling and playing! This was the first time I had seen this in almost 4 weeks. It was awesome and I took pictures. I'll have to wait until Dave gets down this weekend to post them.
Unfortunately, the test showed fluid in 3 areas around her liver. They do not know if they are absesses (infected pockets of fluid) or just fluid. My understanding is that it is fluid that was leftover from her whole swelling incident...not new fluid. The fluid/absesses are not hurting the liver. Guess I'm not surprised by all this. I just new something wasn't quite right and better to find it before we go home.
I woke up this morning to the most beautiful noise. At first I thought Ellie was upset then I realized she was playing and babbling. I went over to the crib to say good morning and got the best smile! What a nice change. The plan for today was to have the fluid taken out (they will do this by needle, they put a tube in to drain excess fluid). I was even hurried out of the shower and rushed down to Radiology with Ellie in her pillow covered wagon. When we arrived they told us there was a mistake and it has to wait until tomorrow when we have an anethesiologist present. Oh well. In the meantime, they decided to start her feeds back up this evening at a very slow pace of 10 ml per hour and increasing 2ml more every 4 hours. Of course she won't get very far since they have to stop feeds at midnight due to her procedure in the morning.
Oh, and the best news is that Dr. Ostlie gave permission to try oral feeds again 3 x a day. Only about 10cc which is small but enough to practice with. When I gave her the cereal, she tasted it with her tongue twice then opened her mouth wide for a big bite. She went back to eating like she hadn't missed out on anything!!! This is so awesome. One less thing to reteach. Well, I'm off to bed to get ready for a busy day. Talk to you all soon.
Wednesday, January 2, 2008
Look At Her Now!
Here are lots of new pictures of Miss Ellie without tubes on her face. We also added in a picture of her belly. She has many other bruises and her skin is pretty beat up but her belly is the worst of it. We tried to keep it hidden from the girls but it was uncovered yesterday when we came in. Reagan looked at Ellie and just said, "She's beautiful mommy!".
There's also pictures of the girls visiting us at the hospital. We were so happy to have them! Dave is getting ready to pick up the girls from my sister's house and take them home. How nice that will be for them. We realized today that because of the ice storm (we had no power for 4 days), Ellie's j-tube surgery and then the rest of her hospital time that they have not been home since Dec. 10!
On a last note, Dave was talking to one of the nurses and she said that she had never had Ellie, but that she had checked in on her and that she couldn't believe how far she'd come. Seems like we get a lot of charge nurses and others we have never met who know her. I think having that silo on her tummy for so long really stood out. Speaking of her silo (bag on her belly that was then wrapped in gauze), we just have to share some the names that were given to it by nurses and doctors: belly turban and tower of gauze.
**New news: we just heard they are doing orders to send Ellie to a regular floor. Yeah!
There's also pictures of the girls visiting us at the hospital. We were so happy to have them! Dave is getting ready to pick up the girls from my sister's house and take them home. How nice that will be for them. We realized today that because of the ice storm (we had no power for 4 days), Ellie's j-tube surgery and then the rest of her hospital time that they have not been home since Dec. 10!
On a last note, Dave was talking to one of the nurses and she said that she had never had Ellie, but that she had checked in on her and that she couldn't believe how far she'd come. Seems like we get a lot of charge nurses and others we have never met who know her. I think having that silo on her tummy for so long really stood out. Speaking of her silo (bag on her belly that was then wrapped in gauze), we just have to share some the names that were given to it by nurses and doctors: belly turban and tower of gauze.
**New news: we just heard they are doing orders to send Ellie to a regular floor. Yeah!
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